[ewmb]

#1063417

Good luck,
I had RAI in May 2009. I am now feeling so much better than I did while sick. It will take time but you will get better.

ewmb

[Ski]

#1063418

Thanks so much for spelling out your process!! I think it really helps those who come afterward to see what leads a patient to one choice or another (and it also helps everyone to see why one choice does not fit all). Best of luck with your treatment, visit often, let us know how you’re doing! (Love the attitude, by the way, best way to approach anything is with a smile!) ” title=”Very Happy” />

[Bobbi]

#1063419

Wishing you good luck, and good health soon.

[Jules]

#1018231

Well today is the day. I am having 20mcl at noon today, I promiss to check infrom time to time to tell you how I am doing. Here is how I go to this choice

Long story short is I was dx Jun 26 2010, I went on MMI until Aug26 when i ended up in the hosispital allergic to the meds.

During these 2 months on meds I knew something was not right, I had gone to 2 enods and was getting ready to go to my third when I had my emergancy. Swollen throat was blocking my airway.

After the hosp stay I went to the new endo and said I refuse RAI I want surgery period end of story. He put me on the Beta Blockers and anxity pills and discussed the issue with surgery. You see you can only have it when you are euthyroid or at least close no matter what you want your body has to be ready. Since I was not even close to being regulated, I went to 2 surgeons and emailed afew others. they all stated that I could die from the surgery.

I called the endo and I asked to be scheduled for the RAI. I went in for my uptake and I was at 52%. I went into the Endo and he said OK are you ready? I told him to schedule it.

So that is where I am today, I know that I will be fine. I will not be glowing and I get a 3 day vacation from the hubby and one day off from work sweet.

[Jules]

#1063420

24 hr update took the pill. Had afunny smell and taste for1min. Drove myself home. Feel great! Slept just fine. Funny I don’t feel radioactive

[Jules]

#1063421

Day 5 update well the neck is getting sore however I have been able to work yesterday and today. I am on pain meds for the sore throat but can’t take them at work. Trying ice. Seems to help some. Other than a sore? Tender? Throat and a froggy voice all is well.

[Jules]

#1063422

Updating – I am having a few minor eyes issues that have gotten worse from the RAI I Have an appointment with the Shiley Eye Center tomorrow. Frustrating that I can not drive at night. UGH. Other than that I think my thyroid id starting to dump a little. Is there any way, that I could be going hypor so quickly, I am starting to get toe cramps and very cold.

[Ski]

#1063423

Not very likely that you’d be hypo within a week, but the body does react to dramatic changes in odd ways ~ lots of us have had extremely odd symptoms (I had such severe abdominal pain about a week later that I had to use a liquid diet for three days before I felt better, but the doctor could never find a true cause for the pain, despite all kinds of screenings and tests). Typically we recommend waiting until you’re experiencing 4 or 5 classic hypothyroid symptoms, and experiencing them often, before going in for new labs. Always good to check in with the doctor’s office though, if you’re very concerned.

Good luck with your appointment at the eye center! There is a chance that RAI can cause some eye symptoms, but typically they resolve pretty quickly. I had a few months of dry, gritty eyes after my first RAI, which resolved completely. I had no changes at all after my second (more than a year later).

[Jules]

#1063424

Ok So I am now 13 days past RAI. I am still having some minor eye issues.

Here is the update in detail
On Saturday day 9 my thyroid dumped and boy do I mean dump. I am on Metopolol for the rapid heart rate. I take them as I needed. I’m usually about 150 mg per day. Saturday I had to take 350mg to make it through the day. I went to the endo on Monday. He said well you should really start feeling better real soon it looks like your thyroid is clearing out its storage of hormones . Sure enough yesterday I only took 75 mg for the whole day and felt almost normal it was truly euphoric. I really had to remind myself to take it easy and not over do it. I went and had the blood drawn for the first time in months. and I get one ever 4 weeks until who know when.

Regarding the eyes – I went to the Shiley eye center. Not too impressed because he really did not look at or do much of anything other than do a color test and one measurement and then a 2 person team cam in an did about 40 pictures of my eyes. I was told come back next month. Oh and to stay on the steroids. I told the endo and he is concerned with keeping me on the steroids becaus of the side effect. I was OK with staying on them until I did some research and now I think I am going to ween my self down and off of them and see what happens with the eyes.

Why the last 12 days have not been a walk in the park – I am seeing how really sick i actually was and that there might be light at the end of this tunnel called graves. More later.

[Bobbi]

#1063425

Yes, the tunnel does end. Good luck with the eyes. I would recommend, though, that you talk over going off the steroids with your doctors. Make sure that you understand precisely why they were prescribed in your case — most of us don’t get them routinely prescribed. Make sure that you understand what the consequences are likely to be, with respect to your eyes. Itmay well be that you’ll be ok without them, but just don’t do this without a consult with your doctor.

Wishing you good health soon.

[Ski]

#1063426

I agree with Bobbi ~ the doctors have told us that steroids are simply a temporary fix, and symptoms tend to return when the steroids are withdrawn, so be very careful how you do that, and make sure you have a very frank discussion with all of your doctors about every element of your treatment. I know the side effects of steroids are scary, but a doctor has made the determination that they are more helpful than harmful to you at this time, so I would recommend making sure that doctor is comfortable with stopping them.

From what I’ve experienced and heard, the appointment you had at the eye center was probably MORE extensive than you’d find with most ophthalmologists. They did the groundwork, got their "baseline" on you, and from now on will have more context in which to place your current symptoms. There truly is not much that can be done in the "hot phase" ~ the color test was checking to see if your optic nerve is being affected, and the pictures will help them "map" your progress.

[Jules]

#1063427

Ok so now what …
I took blood work on Monday after the Dr. appointment, Im now in normal range and dropping fast. I got the test results and I am mid normal. Dr’s note to nurse is wow dropping fast. I have to ccall the Dr because that statement just will not do it for me. Remember that day I said I felt great. well I have been slidding back into not feeling well sore throat, hoarse voice, light pulse cold intolerance cramping toes constipation weight gain past 3 days lack of appitite etc… I asked the nurse about so when do I start the replacement and she said normal is good you dont need anything. uh yea I do. I know by the feeling that I am having i am slipping in to the hypo range.

Yes I am still on the steroids. only a smaller dose and he wants to step me down off of them. I go to the eye Dr and the Endo on the same day next month.

I really dont want to go too low before starting replacement any Ideas?

[smiar]

#1063428

Relax,breathe, be good to yourself and be patient with this diesease. While it is easy for me to say this now since I had my RAI treatment in Feb 2010 things due get better. I started replacement therapy 8 weeks after my RAI and it was tricky since it put me in a state of overactivity again by June. My meds have been revised twice now and as of October 2010 I am right where they want me to be. While everyone is not the same it will get better!!
When I think back on how I felt before my RAI treatment it was a really scary time. If anything getting this disease has taught my how precious life is and how important it is to take care of yourself. Get plenty of rest and make sure to do things that make you happy. And smile, it will get better!!

Best of luck to you with your prognosis.
smiar

[Jules]

#1063429

Just Checking in:

I am 46 days Post RAI 20 MCI with in 10 days I was in the normal range on the T3 TSH still suppressed. I have been having swelling and pain back down where the thyroid is/use to be? I went to the endo and he said there is no thyroid left. Um yes there is and I can feel it and see it in the morning. I took blood work and I I did a 1 month follow up with blood work and the T# and the TSH have not changed at all. It upset me that the endo whom I have known for 20 years said (well his nurse told me) that I would receive a letter and to schedule an appointment with the primary. Thank God I have a great primary that is use to Hypo and he gave me the monthly standing order for TSH T3 T4 and a CBC panel. Since I had stared this journey called graves the red and White and Nepho etc have all been out of whack. So I am in a holding pattern on figuring out what is happening with me _ get me next blood draw next week so we will see what the true numbers are.

About the TED yes I am still having issues with it. It appears to be doing a little better off the steroids then on them but there is the double vision thing. So I really am not too sure what were going to do for that because I am still in the hot phase. All of my Dr’s think that I am allergic to the filler on most pills because I have so many pills I am allergic too. Including now steroids.

As for how I am feeling I am having more good days than bad days. I could not imagine having to deal with the uncontrolled Graves for longer than I did. July 1 – Nov 5th. (I was allergic to the MMI and PTU and was in the hospital with throat edema) Oh boy what that not fun at all.

The other day I did so much I forgot how really truly sick I was until I sat down that night and realized that wow I went all day with out a mandatory rest period. Usually I was having rest periods every 20 mins or so. To those waiting and seeing and to those like me who wanted surgery but could not because the levels were too high. Getting the RAI is totally worth the hassle. Yes I am still concerned about future issues from the radiation however I really do believe that I would have died from a Thyroid storm had I not taken care of this pronto. Beta blockers were only taking the edge off and not taking care of my issues.

So All in all I am happy with how things are going. Not as fast as I wish them to go but still. I am alive and finally realizing how dirty and messy my home got while I was out of it. Now I am putting all of my energy into getting it straightened out everything back into its place. I can tell you my mind has finally come back and my memory is getting a whole heck of a lot better.

Merry Christmas to those of us who celebrate it.
Jules

[Bobbi]

#1063430

Hey, Jules, I am so pleased to hear that you are feeling so much better. That is so great!

[Author]

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